Leiomyosarcoma

Melodyyy

I'm one in a million. That's the incidence of my sarcoma. Needless to say, I don't have anyone to share my cancer experience. There are 650 of us in the USA this year. How to make contact? At least people in this chat know what its like to have a rare cancer! Hello!

TereB

Hi Melody, I think I know the feeling of being one in a million. I also have a rare cancer, I think I'm a 2%. I tried posting here to find other rare ones like me but I had to wait a long time. Later Google pick it up so do NOT post your personal email.

Sooner or later you will find another one in a million, you just have to wait a little bit.

Are you through with treatment? I hope so and I hope all is well with you.

All the best and God Bless,
TereB

Melodyyy

TereB said:

Hi Melody, I think I know the feeling of being one in a million. I also have a rare cancer, I think I'm a 2%. I tried posting here to find other rare ones like me but I had to wait a long time. Later Google pick it up so do NOT post your personal email.

Sooner or later you will find another one in a million, you just have to wait a little bit.

Are you through with treatment? I hope so and I hope all is well with you.

All the best and God Bless,
TereB

Dear TereB,

I am still in treatment. I am three weeks into my radiation and I have 4 weeks to go. Hopefully, someone will post who has LMS one of these days. Thank you for your advise about the email address. I am really tired but otherwise doing well. How is your treatment going?

Take Care, Melody

TereB

Melodyyy said:

Dear TereB,

I am still in treatment. I am three weeks into my radiation and I have 4 weeks to go. Hopefully, someone will post who has LMS one of these days. Thank you for your advise about the email address. I am really tired but otherwise doing well. How is your treatment going?

Take Care, Melody

I'm not in treatment at the moment. Last rad was July 05 and at the moment no pain which is good and my tumors seem to be dormant which is also good. Just coming out of depression so all seems better now. There is no cure for my tumors, just radiation as palliative care when they hurt.

You are in my prayers from now on and I hope with all my heart that all goes well. You never know when someone with LMS will see your bulletin, so do not despair if you have to wait a little bit. Have you asked your doctor if they know of any support groups? Other patients with the same?

I am glad you are doing well even if you are a bit tired, that is normal and it will go away after you finish with your rad. Have you tried the survivors chat room? There may be someone with LMS. If not, they are good with support.

All the best,
TereB

Melodyyy

TereB said:

I'm not in treatment at the moment. Last rad was July 05 and at the moment no pain which is good and my tumors seem to be dormant which is also good. Just coming out of depression so all seems better now. There is no cure for my tumors, just radiation as palliative care when they hurt.

You are in my prayers from now on and I hope with all my heart that all goes well. You never know when someone with LMS will see your bulletin, so do not despair if you have to wait a little bit. Have you asked your doctor if they know of any support groups? Other patients with the same?

I am glad you are doing well even if you are a bit tired, that is normal and it will go away after you finish with your rad. Have you tried the survivors chat room? There may be someone with LMS. If not, they are good with support.

All the best,
TereB

I'm glad that the depression is lifting for you. I have bipolar disorder (manic depressive) so I have a front-row perspective on depression. Are you taking any antidepressants or mood stabilizers? I'm glad that your tumors are dormant. May they stay that way for ten thousand years. I have been to one support group and the members were all 30 years older than me. Their stage of life contrasted too sharply with mine. I have applied to the Wellness Community for an online support group. For some reason, I cannot assess Chat on this website. I am trying to make sense of what has happened to me and what the future holds. I finish radiation in 4 weeks and then I don't see my oncologist for another 5 weeks. I don't know what comes next. More scans? Remission? Wouldn't that be nice! Many people seem to have forgotten that I am still dealing with emotions connected to cancer. They have crossed me off their worry list, and I am starting to feel more alone. Even my husband, who was great when I was first diagnosed, is starting to make demands on me that I'm not ready for. He just doesn't get how tired I am. I'm being a trooper and not complaining and running the kids all over and keeping house. Maybe I should just lie in bed ;)Now my daughter wants me to take her to the aquarium Sunday for her birthday and I don't know if I will have enough energy for this. I'm going to bed now. I get to sleep in tomorrow and I'm going to stay in my PJs all day!

Have a nice weekend, Melody

TereB

Melodyyy said:

I'm glad that the depression is lifting for you. I have bipolar disorder (manic depressive) so I have a front-row perspective on depression. Are you taking any antidepressants or mood stabilizers? I'm glad that your tumors are dormant. May they stay that way for ten thousand years. I have been to one support group and the members were all 30 years older than me. Their stage of life contrasted too sharply with mine. I have applied to the Wellness Community for an online support group. For some reason, I cannot assess Chat on this website. I am trying to make sense of what has happened to me and what the future holds. I finish radiation in 4 weeks and then I don't see my oncologist for another 5 weeks. I don't know what comes next. More scans? Remission? Wouldn't that be nice! Many people seem to have forgotten that I am still dealing with emotions connected to cancer. They have crossed me off their worry list, and I am starting to feel more alone. Even my husband, who was great when I was first diagnosed, is starting to make demands on me that I'm not ready for. He just doesn't get how tired I am. I'm being a trooper and not complaining and running the kids all over and keeping house. Maybe I should just lie in bed ;)Now my daughter wants me to take her to the aquarium Sunday for her birthday and I don't know if I will have enough energy for this. I'm going to bed now. I get to sleep in tomorrow and I'm going to stay in my PJs all day!

Have a nice weekend, Melody

Hey Melody,
Sorry about the bipolar disorder. I take Prozac on and off. I was off it for a while and maybe that is why the depression got worse. Now I only have one way to go and that is up.
I can understand, sometimes people in support groups are so much older or younger and it just doesn't feel right. If you can come to the bulletins I see no reason why you can't go to the chat rooms, there are two. Have you tried it on the page before the bulletins? Just click on the chat room that has some people in it. Sometimes people in the chat room are the young ones, I call them 9teens, and they agree on special times to meet. People at the chat room are all survivors and caregivers, all ages, men and women and all get along. It is a good place to vent if you have the need, they all understand. Sometimes we cry together, other times we laught and they are great at giving support because everybody has gone thru similar things.
You may have another scan to see how radiation worked, and I hope they tell you are in remission for ever.
The emotions having to do with cancer last a long time and they are very normal but people who have not gone thru something like that do not understand it, just like years later you go for your followup which happens to be good and you are happy but nobody else seems to be excited about it.

Radiation makes you tired anda it is important that you rest, take naps. After you finished rad, the tiredness will go away little by little but it takes about 2-3 months. Does your husband go with you to radiation treatment? Maybe the doc could explain to him about tiredness.
You need time to rest and to relax, especially while you are in treatment. Do you have friends or family near who can help with the kids and other things?

Yes, stay in PJs all day, take time off, time for yourself!!

Where do you live? How old are your kids?

I hope you were able to relax and rest this weekend.

Hugs and prayers,
TereB

Melodyyy

TereB said:

Hey Melody,
Sorry about the bipolar disorder. I take Prozac on and off. I was off it for a while and maybe that is why the depression got worse. Now I only have one way to go and that is up.
I can understand, sometimes people in support groups are so much older or younger and it just doesn't feel right. If you can come to the bulletins I see no reason why you can't go to the chat rooms, there are two. Have you tried it on the page before the bulletins? Just click on the chat room that has some people in it. Sometimes people in the chat room are the young ones, I call them 9teens, and they agree on special times to meet. People at the chat room are all survivors and caregivers, all ages, men and women and all get along. It is a good place to vent if you have the need, they all understand. Sometimes we cry together, other times we laught and they are great at giving support because everybody has gone thru similar things.
You may have another scan to see how radiation worked, and I hope they tell you are in remission for ever.
The emotions having to do with cancer last a long time and they are very normal but people who have not gone thru something like that do not understand it, just like years later you go for your followup which happens to be good and you are happy but nobody else seems to be excited about it.

Radiation makes you tired anda it is important that you rest, take naps. After you finished rad, the tiredness will go away little by little but it takes about 2-3 months. Does your husband go with you to radiation treatment? Maybe the doc could explain to him about tiredness.
You need time to rest and to relax, especially while you are in treatment. Do you have friends or family near who can help with the kids and other things?

Yes, stay in PJs all day, take time off, time for yourself!!

Where do you live? How old are your kids?

I hope you were able to relax and rest this weekend.

Hugs and prayers,
TereB

The bipolar is managable. Try taking the Prozac continuously. It serves as a stabilizer when the winds blow. I finally got into chat. I had to turn off my firewall. Yes, I need to talk with someone about how my family has taken me off its "worry list". I'm still freaked out, but I'm glad everyone else is doing better! Husband has gone to radiation appointments. Frustrating. I live in California and I have two kids. My girl is 13 and my boy is 11. I'm 44 and my husband is 51. We ended up going to the aquarium this weekend, and I got a wheelchair because I got too tired. It worked out though. My girl said it was the perfect birthday. Where do you live?

TereB

Melodyyy said:

The bipolar is managable. Try taking the Prozac continuously. It serves as a stabilizer when the winds blow. I finally got into chat. I had to turn off my firewall. Yes, I need to talk with someone about how my family has taken me off its "worry list". I'm still freaked out, but I'm glad everyone else is doing better! Husband has gone to radiation appointments. Frustrating. I live in California and I have two kids. My girl is 13 and my boy is 11. I'm 44 and my husband is 51. We ended up going to the aquarium this weekend, and I got a wheelchair because I got too tired. It worked out though. My girl said it was the perfect birthday. Where do you live?

Hi Melody,
A friend, DBilak, gave me a website for leiomysarcoma which looks pretty good and with all kinds of information. You may want to check it out:
http://www.leiomyosarcoma.info/

I'm glad you were able to go in the chat room and I hope you met some of the nice people there. Being taken off the "worry list" has happened to others and maybe you'll find someone in the chat room, I can't remember any names now.
I prefer to go to radiation treatment by myself, it is easier for me. I am in Houston, two kids too, girl 24 & boy 21. I've been battling this since 1987 so husband and kids understand how I feel, but it has taken years for them to accept it. Using the wheelchair at the aquarium was a good idea and Im glad it worked out. Im also glad your daughter said it was the perfect birthday.
All the best,
TereB

Melodyyy

TereB said:

Hi Melody,
A friend, DBilak, gave me a website for leiomysarcoma which looks pretty good and with all kinds of information. You may want to check it out:
http://www.leiomyosarcoma.info/

I'm glad you were able to go in the chat room and I hope you met some of the nice people there. Being taken off the "worry list" has happened to others and maybe you'll find someone in the chat room, I can't remember any names now.
I prefer to go to radiation treatment by myself, it is easier for me. I am in Houston, two kids too, girl 24 & boy 21. I've been battling this since 1987 so husband and kids understand how I feel, but it has taken years for them to accept it. Using the wheelchair at the aquarium was a good idea and Im glad it worked out. Im also glad your daughter said it was the perfect birthday.
All the best,
TereB

Dear TereB,

Let's take this conversation somewhere private. My email address is Melodyyamaguchi@comcast.net. If someone else can pick up my email address from a link here, maybe I can help them deal with their cancer. I'm sure noone would abuse it. Thanks for the website. I'll check it out tomorrow. You've gotten your kids past the teenage years- good for you! I'm just peeking at it, and it doesn't look fun. But, hey- just as long as I'm here to see it, huh? I'm sorry you have had to deal with cancer for so long. I'm just realizing that this isn't going to go away. I'm a little slow on the uptake! Officially half-way through radiation. My prescription changes tomorrow, whatever that means. Did you get daffidals this year? My radiation oncology bought them from the American Cancer Society. It was a real day brightener. Also, I did an evening called "Look Good, Feel Better" through the ACS, and I got a makeover and a box full of makekup to go with it. Thank God for concealer and blush. I look so washed out these days. I look downright scary in the morning. Today the sun is shining and I feel better. That rain was really getting me down, says the California whiner! Must go and tend to children. Take care. Drop me an email!

Love, Melody

debcookie

My fiancee was just diagnosed 2 months ago, with a 15 inch mass in his abdomen, high grade leiomyosarcoma with inferior vena cava compression, he has 70 pounds of ascites on him, one spot in his lung and one in his liver, he has had 2 rounds of Doxil and I have no idea of what is next!!!!!!!!!!!!! Every day is a new adventure.

debcookie

debcookie said:

My fiancee was just diagnosed 2 months ago, with a 15 inch mass in his abdomen, high grade leiomyosarcoma with inferior vena cava compression, he has 70 pounds of ascites on him, one spot in his lung and one in his liver, he has had 2 rounds of Doxil and I have no idea of what is next!!!!!!!!!!!!! Every day is a new adventure.

he died april 12

theatricaleyes

Hi Melody! I am right there with you. I also have leiomyosarcoma. I was diagnosed six months ago and have been in treatment ever since (chemo). Unfortunately I do not know how many treatments I will have to endure because I have either tumors throughout my body.

How are you doing?

I just want you to know that you are not alone!

stepper55

Melodyyy,
You can share your cancer experience with me. I am 51 an had a hysterectomy in Oct 06. They found LMS in a fibroid tumor. They told me I probably didn't need to worry because they removed the fibroid and the sarcoma was encapsulated in it. But I had a Pet Scan to make sure and they found a spot on my lung that was LMS. I just got back from MD Anderson. I start chemo this week. Gemzar & Taxotere (have you heard of those drugs?) I was taken by suprise by all of this. Aside from heavy menstrual bleeding I was healthy, ate well, and spent 4 days a week at the gym. I knew I had fibroid tumors and needed a hysterectomy but I thought that would fix everything. Now my whole life has changed. I have bought a wig and turbans and am trying to prepare myself for what is ahead but it's still very scary. How are you doing?

mecca1961

stepper55 said:

Melodyyy,
You can share your cancer experience with me. I am 51 an had a hysterectomy in Oct 06. They found LMS in a fibroid tumor. They told me I probably didn't need to worry because they removed the fibroid and the sarcoma was encapsulated in it. But I had a Pet Scan to make sure and they found a spot on my lung that was LMS. I just got back from MD Anderson. I start chemo this week. Gemzar & Taxotere (have you heard of those drugs?) I was taken by suprise by all of this. Aside from heavy menstrual bleeding I was healthy, ate well, and spent 4 days a week at the gym. I knew I had fibroid tumors and needed a hysterectomy but I thought that would fix everything. Now my whole life has changed. I have bought a wig and turbans and am trying to prepare myself for what is ahead but it's still very scary. How are you doing?

I would love to chat with you sometime. I am 45 and was diagnosed with LMS in my unterine muscle this July 2006 and it was after my hysterectomy. It was stage I and the margins were good so they think I am doing well. I am simply looking for someone to chat with that has had the same type of cancer.

sur5er

I'm not one in a million - yet. Mine is only about one in 10,000 to 15,000 from what I've seen on international websites. I have appendiceal adenocarcinoma (cancer of the appendix). They don't even keep figures of how many people there are in the US with this, since it is currently so rare and it gets treated aa colon cancer, so they numbers are hidden in with all the other colon and rectal survivers.

I was diagnosed as stage IV after my surgery and given between 6 and 18 months survival by 3 oncologists. That was 3 years ago this month.

I am still undergoing chemo (5-FU, Leucovorin and Oxiliplatin). They keep finding new nodes, which they say are metastatic, but they have never biopsied any of them to verify this. I have a renal cyst, numerous nodes in both lungs and "some involvement" in the bladder. The good news is that with the exception ofseveral new nodes in the lungs found earlier this month, everything else is either stable or has actually reduced in size during the last 12 to 15 months.

It's always nice to meet another "rare" person.

Tammyfiance

sur5er said:

I'm not one in a million - yet. Mine is only about one in 10,000 to 15,000 from what I've seen on international websites. I have appendiceal adenocarcinoma (cancer of the appendix). They don't even keep figures of how many people there are in the US with this, since it is currently so rare and it gets treated aa colon cancer, so they numbers are hidden in with all the other colon and rectal survivers.

I was diagnosed as stage IV after my surgery and given between 6 and 18 months survival by 3 oncologists. That was 3 years ago this month.

I am still undergoing chemo (5-FU, Leucovorin and Oxiliplatin). They keep finding new nodes, which they say are metastatic, but they have never biopsied any of them to verify this. I have a renal cyst, numerous nodes in both lungs and "some involvement" in the bladder. The good news is that with the exception ofseveral new nodes in the lungs found earlier this month, everything else is either stable or has actually reduced in size during the last 12 to 15 months.

It's always nice to meet another "rare" person.

My fiance has a very rare cancer. His oncologist had never seen it before. So we were referred to Dr. Einhorn at Indiana State, since his primary tumor was in his testical. My fiance has stage IV adenocarcinoma of the rete testis. Dr. Einhorn has only heard of it a couple times before about 6 years ago. So far no chemo has really made any difference but he's looking to start Doxil next. I would just so love to talk to anyone who know anything about this cancer. I've left other messages on other sites and have never gotten anything back, but I thought I'd try here. Here's hoping...
Tammy

JoeDH

Tammyfiance said:

My fiance has a very rare cancer. His oncologist had never seen it before. So we were referred to Dr. Einhorn at Indiana State, since his primary tumor was in his testical. My fiance has stage IV adenocarcinoma of the rete testis. Dr. Einhorn has only heard of it a couple times before about 6 years ago. So far no chemo has really made any difference but he's looking to start Doxil next. I would just so love to talk to anyone who know anything about this cancer. I've left other messages on other sites and have never gotten anything back, but I thought I'd try here. Here's hoping...
Tammy

Hi Tammy. My name is Joe. My wife has lieomyosarcoma. It started as a uterine fibroid 2 yrs ago. She had rad treatment but was told chemo is ineffictive against lieomyosarcoma. Now, 2 yrs later, it has spread to her back, lungs and sternum. I know more than I wish I did about this. Reply if I can help in any way. Joe

JoeDH

stepper55 said:

Melodyyy,
You can share your cancer experience with me. I am 51 an had a hysterectomy in Oct 06. They found LMS in a fibroid tumor. They told me I probably didn't need to worry because they removed the fibroid and the sarcoma was encapsulated in it. But I had a Pet Scan to make sure and they found a spot on my lung that was LMS. I just got back from MD Anderson. I start chemo this week. Gemzar & Taxotere (have you heard of those drugs?) I was taken by suprise by all of this. Aside from heavy menstrual bleeding I was healthy, ate well, and spent 4 days a week at the gym. I knew I had fibroid tumors and needed a hysterectomy but I thought that would fix everything. Now my whole life has changed. I have bought a wig and turbans and am trying to prepare myself for what is ahead but it's still very scary. How are you doing?

My wife had a uterine fibroid removed 2 yrs ago. It too had encapsulated lieomyosarcoma. She had 24 rad treatments at that time. Now, 2 yrs later, it has spread into her spine, lungs and sternum. Probably elsewhere too. She was apparently fine 3 weeks ago. Then her back and chest started to cause her pain. Then she could not walk properly. The cancer had destroyed two vertrabre and compressed the spine. They removed the two vertrabre and repaired her spine with titanium rods and cement. She was sent home 2 weeks ago with painkillers and told that maybe 6 months to like. I am lost.
Joe Hendrix

tanyah

JoeDH said:

My wife had a uterine fibroid removed 2 yrs ago. It too had encapsulated lieomyosarcoma. She had 24 rad treatments at that time. Now, 2 yrs later, it has spread into her spine, lungs and sternum. Probably elsewhere too. She was apparently fine 3 weeks ago. Then her back and chest started to cause her pain. Then she could not walk properly. The cancer had destroyed two vertrabre and compressed the spine. They removed the two vertrabre and repaired her spine with titanium rods and cement. She was sent home 2 weeks ago with painkillers and told that maybe 6 months to like. I am lost.
Joe Hendrix

my cousin has been fighting this type of cancer for almost a year now... she has tried several types of chemo with little or no response... i have read some web sites were past survivors had used herbal or homeo therapy... has anyone here ever had any sucess with alternative treatments or can recommend anything... i would appreciate the advice... she does not get online to read too much about her cancer. im sure most of the information is too grim for her to deal with right now... i hope someone can help... thank you... and best wishes to you all...

Bella29

tanyah said:

my cousin has been fighting this type of cancer for almost a year now... she has tried several types of chemo with little or no response... i have read some web sites were past survivors had used herbal or homeo therapy... has anyone here ever had any sucess with alternative treatments or can recommend anything... i would appreciate the advice... she does not get online to read too much about her cancer. im sure most of the information is too grim for her to deal with right now... i hope someone can help... thank you... and best wishes to you all...

Sloane Kettering is using a protocol of Gemzar(Gemcitabine), and Taxotere. She may also be eligible for a drug called Gleevic(sp?). I was not, but think it had to do with some genetic marker-forget why. My local oncologist used this protocol. I was first diagnosed 5/05 and have been cancer free since the end of the chemo regimen. He removed all the cancer first, and the fluid surrounding it. Went on chemo for six sessions, did an exploratory, found small area on bowel still infected. Finished the 8(total) session chemo regimen, and I have been great since then. Please, if you are not close to Sloane Kettering, find a good oncologist in your area that specializes in the area that tumor appeared. Mine was Uterine and all surrounding areas.So I have a GYN/Oncologist. I highly reccommend him. They did a total hysterectomy for me, removed the omentum and some other things. If you would like to tell me where your cousin lives/is, I can ask him to refer somewhere there. There is also a procedure not available in NY called intraperitoneal hypthermic perfusion. They pour the heated chemo into the abominal area. Risky,but worked wonders for my cousin who had adenocarcinoma. I know it is done in Pa. OH. and her Dr. moved to CA. so maybe there too. But I need to know site of origin and Stage to tell him. I had a zero to 20% chance of living 5 years. They said I might only have 3 months because my original gyn missed the entire thing. Don't give up hope. There are great Doctors out there.

Bella29

JoeDH said:

My wife had a uterine fibroid removed 2 yrs ago. It too had encapsulated lieomyosarcoma. She had 24 rad treatments at that time. Now, 2 yrs later, it has spread into her spine, lungs and sternum. Probably elsewhere too. She was apparently fine 3 weeks ago. Then her back and chest started to cause her pain. Then she could not walk properly. The cancer had destroyed two vertrabre and compressed the spine. They removed the two vertrabre and repaired her spine with titanium rods and cement. She was sent home 2 weeks ago with painkillers and told that maybe 6 months to like. I am lost.
Joe Hendrix

Dear Joe, I am so sorry for you. The hardest thing for me was the agony it caused my family. Don't stop trying, try another Dr. I am not sure about the bone, but there are some procedures done only in three states that might appy to you and your wife. For more detail see the message reply to Tanyh (?). I cannot see it as backpage expired and I am forgetful to say the least. I hope the Doctors are wrong. I was Stage IV found at an emergency visit to hospital for pain. They said maybe only three months to 5 years if I responded to the chemo. I did. This happened in May 05. If my other message doesn't show up for some reason, I will go into more detail. I will say a prayer for your wife, it works.